Category Archives: Diary of a Diagnosis

I look out the window, or at the floor, or trace the lines of my palms, maybe concentrate on my nails or cuticles.

“Um, it is good news, isn’t it?” I imagine them wondering silently: She’s okay, but is she, you know, okay?

“Yeah.” Of course it’s good news and brings some measure of relief, but it’s not all-inclusive, and therefore offers only a brief respite. There’s a downside attached. For the patient whose doctor wants to be certain that the heartburn is just that and not indicative of heart disease, a negative result equals winning deliverance. The one who’s been accumulating symptoms but has yet to find a diagnosis, that same result rules out another disorder, allowing her to proceed on her scavenger hunt – a mere consolation prize.

More than three years have passed since I first spoke with an ENT about a hearing problem, namely that in my right ear I hear what must be blood pumping through my veins, given that sound is always in perfect time with my heartbeat. Pulsatile tinnitus, he tells me. It is unnerving, but nothing to worry about, he said, and no way to treat it, so I try to ignore it. Later that year I returned because of a scratchy throat and raspy voice. These were the first in a series of symptoms, many of which began roughly around the same time, the rest joining in succession, each symptom with me still.

Some doctors I’ve seen: a hematologist, an endocrinologist, an otolaryngologist, a physiatrist, a few physical therapists, a gynecologist, a neurologist, a gastroenterologist, a dentist, and I’ve yet to schedule the optometrist. (He’s next.) The usual checkpoints: labs, heart, lungs, more labs, allergies, more labs, MRIs, X-rays, CT scans, and now regular phlebotomies.

With each new symptom, every different specialist, each new round of tests, I’ve thought This is it. Now we’ll know what’s causing all this and how to treat it. There have been negative results. Positive results. Another referral. Another pile of new patient paperwork. Another round of tests. And another diagnosis – or lack thereof. Each one is another clue, another step behind me in this endless scavenger hunt. I imagine renting commercial space somewhere central to all my doctors where just after they assemble, Dr. House raises his voice strolling up to the whiteboard – “Differential diagnosis, people!” – and they begin to brainstorm.

A couple close friends have asked if I’m worried about what the results might show. But what it could be hasn’t been the issue (well, there have been fleeting moments…). What plagues me is the idea of the search going on endlessly while disorders are ruled out one after another but the symptoms remain, maybe new ones appear, while time, and life, pass by. The realization that there may be no end to this relentless fatigue, the feeling that someone is standing on my chest, the sense of fullness and heaviness descending from my right ear, down the neck, extending into the collarbone, and now down the arm, or any of my other symptoms. (My right side just feels so wrong.) My health, my body has assumed the role of dominatrix. Throughout the day she tells me what I can and can’t do. If I am stubborn and fight she whips me into submission, and punishes me for disobeying.

You’ll do as I say!

You see how problematic this relationship is. I only submit to journals, websites, and the like.

My body, my boss. She knows my mind runs far ahead of me, passion racing alongside. I have projects, plans. Things I’m aching to accomplish – freelance work, my own writing projects, plans for fundraising and awareness campaigns, return to volunteer work. I’ve got shit to do – and she’s standing in my way. Insistent on dictating my agenda. Refusing to relinquish control. I start something, she throws some stabbing pain my way. Plans to go out? She weighs me down with fatigue. Writing? A little dose of nausea, just enough to force me to lie down. She controls everything. Plans. Finances. Relationships. Illness takes control away from you, and unless you can name it (read: know how to treat it), you have no idea when you’ll get control back.

Some people think it’s crazy that I’d rather get bad news than to leave with no more answers than I came with. But if we don’t know what’s causing the problem we can’t stop it. I want to understand so I can do something. Take action. Take back some control. I just. Need. To know. Sure, there are medications deemed “appropriate” for some of these manifestations, and maybe some will alleviate the pain, help clear the fibro fog, or make things easier to do. But some symptoms ignore every attempt to stifle them, others only scream louder. And I don’t want to just try one pill after another, always adding more to the daily regimen, never figuring out what brought this all on. Even if these issues can’t be resolved, just knowing what to blame would help.

For the patient the diagnostic quest is an indefinite sentence to Uncertainty. A negative result may mean you can rule out heart disease or lupus or pulmonary trouble off the list of worries, but that doesn’t mean the symptoms disappear. People who know the patient often hold the erroneous assumption that after getting the test results one either gets a definitive diagnosis or normal life resumes. I don’t understand what’s wrong. I mean, they said it’s not cancer, right? As though not being able to name it or see unquestionable evidence of suffering means it can’t be real. She looks okay. Must be okay.

In an interview on 60 Minutes Dr. William Gahl, of the Undiagnosed Diseases Program, explained that the patient without proof – visible signs or a definitive diagnosis is often viewed as a hypochondriac, obsessive, or simply a complainer turning something insignificant into a major issue. (You can watch the 12-minute segment here.)

If my doctors discovered everything stemmed from some easily treatable problem, I’d burst with gratitude and do whatever they said. If they found some rare disease or tumor it would be scary, sure. I’d get a second opinion, weigh the options, then be able to make decisions. At least I’d have some idea of what might happen and how to deal with it. I could fight. I could plan. Or I could adjust. I could regain some control.

So I wait. Research. Hope. And try to press onward while trying not to push too hard. But I feel worse, push harder, make it worse, feel more desperate, do more research. Get behind, feel worse, push harder… Anything to get out of this cycle. Any direction. Any diagnosis.

In my last post I ‘fessed up about not telling my doctor information that I (in my professional medical opinion) didn’t think was significant and minimizing symptoms to my family and friends. Look, it’s not like I had a stroke a couple years ago and didn’t think my primary doc would care, or left out something that was a result of a horrendously embarrassing incident just so I could save further humiliation. You know what I’m talking about. It’s all the Stuff You Don’t Think Matters. Over the counter drugs or supplements. Herbal remedies that you don’t think he’ll agree with. Those cigarettes she’ll just tell you to give up for the umpteenth time and you’re just tired of hearing about. Things that don’t even come to mind when you’re filling out the medical history and signing privacy forms and promises to pay. They ask for a list medications and supplements, and it’s easy to think that the allergy pills or extra ibuprofen doesn’t matter or that the ginseng or calcium don’t count because they are natural or just vitamins and give me a break – you’re supposed to take enough vitamin D – why would they care, right? Ah, but all those things do matter, friends and neighbors. You can indeed overdose on vitamin D, as our helpful friends at the Mayo Clinic explain here. And everything you take interacts with everything else you put in your body, drugs, herbs, and food included.

I can’t think of anything I haven’t told my doctors at this point. But hell, two years of trying to figure out what caused my body to start accumulating symptoms has been frustrating, at best, and it’s probably safe to assume that now I give them all more information than they could ever possibly want. (Sorry, but thanks for listening Doc!)

As for family and others, that isn’t the case. There could be a multitude of reasons for not telling your spouse about the chest pain or the blood or whatever is keeping you up at night, for not talking to your kids or your aged parents about the real reason you’re having that next MRI. Our reasons for sharing this info or not are as varied and complex and different from each others’ as are our situations. There is one reason though that I believe more of us have in common than not: our preconceived notions about how others will or won’t respond.

Recently the American Chronic Pain Association took surveys to explore the way people with fibromyalgia see themselves, versus the way the general public perceives them. The results of the surveys, titled “Two Takes on Fibro: Public Perceptions and Private Realities,” were telling. Though almost the entire group of the general population surveyed had heard of fibromyalgia, most of them were not aware of how the condition affects daily life for those dealing with it. (See the Occupy Counter: the Place Setting Resistance from DOD #1 for an example). Still, forty-one percent of them felt that people with fibro are “courageous.” (Thanks, manJ) That topped the list of words they used to describe them. That was a far cry, however, from the word most fibro patients selected to describe how they believe society views them. Sixty-six percent of fibro patients surveyed believed “complainers” was the word society would use. Even now, having read these results, I have to admit that I would have said the same.

“It is a capital mistake to theorize before one has data. Insensibly one begins to

twist facts to suit theories, instead of theories to suit facts.”

-Arthur Conan Doyle

If we’ve ever met, I’ve likely made assumptions about how you view me, even spent time imagining the judgments you might make. She’s lazy. She could do (insert random activity), if she wanted to. So what if she’s tired, everybody is. She never wants to do anything though. I don’t know why the hell Laura rarely calls anymore. She’s either forgotten me or doesn’t care anymore. She’s becoming anti-social. And this, of course, despite my best efforts to ignore that voice, affects how I interact with others – doctors, family, or acquaintances.

Why is this a problem? Because for one thing, as any shrink will tell you, suffering in silence, alone, is not healthy. Okay. We know this. But say you never mention the chest pain you’ve been having to anyone at all, for fear they’ll not take you seriously, then one day the pain is tremendous, bad enough that it scares you into mentioning it for the first time. And then your wife, husband, kid or neighbor gives you an all-too-common response: “It’s probably nothing. Most likely just stress.” And you croak. Maybe that sounds like a drastic example, but is it really? They give you that response because they don’t know that the pain has been consistently increasing for several months, and spreads down your left arm and does all the things they tell us it will do when a heart attack is on the way, so they assume it’s nothing to worry about, but if they knew what was really going on – even if they did think you were a complainer – they may realize the seriousness of it and call 911, saving your life.

In her outstanding essay titled “The Pain Scale,” Eula Biss writes that, when asked to rate pain on the infamous one-to-ten scale, the majority give it a five, unless they are really, probably above what they would consider a ten. Think of the implications here. How could I expect a doctor to provide the most appropriate treatment if I am minimizing my pain and she then believes, for example, the sciatic nerve isn’t yet a problem, otherwise I’d be in more pain? This as I sit there in agony, answering the rating question with an unsure “I don’t know, maybe a five, I guess.” How could I expect anyone to not wonder why the hell the dishes have piled up or a colony of dust bunnies has moved in where the vacuum used to run regularly, when I don’t tell them how much it absolutely kills my back to do these simple, everyday tasks?

But who the hell am I to talk? I am guilty on all counts. I never know how to rate my pain, for all the reasons above and more. What an eight is to me would, I imagine, only have been a five or six to my father, who we all knew was in real serious pain when he finally gave in and took the morphine. But I think of my friend’s daughter who, at all of eleven years old has been battling Ewing’s sarcoma for the past year and had numerous surgeries. “What’s your pain level today, Laura?” they ask. And I imagine that incredibly brave and very young girl and feel like an utter coward simply for admitting I’m in pain. Who the hell am I, where do I get off saying it’s a seven today when she is back in isolation and just had yet another operation?

There is no answer here. The logical Laura knows that just because other people suffer – just because I’ve seen my own father writhing in agony – doesn’t mean my pain is any less significant. She knows this because, well, people tell her and evoke the logical Laura. The louder voice almost always wins though. And I keep my mouth shut, not wanting to be wimpy, not wanting to be thought of as weak, a coward, or any of a number of other negative descriptions. But in the end not being forthright could cost, and it could cost dearly.

I thank the ACPA for conducting that survey and hope that the results are talked about over and over and the word is spread and people like me stop assuming others think the worst of us (even when we think it of ourselves), which only increases anxiety, which only negatively affects the physical pain, which only adds momentum to the whole pain-stress-depression-pain cycle. Discussing our perceptions, even when – and especially if – those perceptions are wrong, can only increase understanding. Which can help, all parties involved and in many ways.

“The single biggest problem with communication is the illusion that it has taken place.”

-George Bernard Shaw

It seems doctors, among others (lawyers, the IRS), are keeping secrets, withholding essential information from us. If you have somehow managed to miss the books and infomercials, you’ll find plenty of conspiracy info online: a Google search for “What the Doctor Won’t Tell You” brings roughly 182,000,000 results. Go on, open another tab and check. I’ll still be here. The numbers vary daily, and according to paranoia – oops! I mean wording – for example, whether you’re considering what doctors (in general) won’t tell people versus what yours doesn’t want you to know. Conspiring as a group they bring over 39,900,000 results, and don’t rank as high as lawyers (we might have guessed), who earn over 50 million, or the ominous group of all those conspiring against us: They, who have the power. 733,000,000 results will make you privy to everything “they won’t tell you.” That, my friends, is one hell of a lot of conspiracy.

Just for laughs I tried “What writers won’t tell you;” Google asked “Did you mean ‘what waiters won’t tell you?’” If waiters keep secrets, most likely it doesn’t involve information we truly want to know. Should curiosity compel you to look though, any of 1,140,000 possible links will take you there. Writers, are less trustworthy than physicians, with 73,300,000. (The answer, Alex, is “Who is James Frey?”) Judging by search results, that is. Even funeral directors can’t be trusted (is no profession sacred?).

There are things doctors won’t tell you, to be sure. There are also things your mother won’t tell you. Even your significant other. (The pants, if we’re all honest about it, probably make all of our butts look big. But no one’s going to bring that one up, now, are they?) There are also valid reasons for a doctor not to mention certain things (which we won’t get into here, lest my attention be diverted). But to assert that doctors do not want you to know something goes further. It breeds a collective mistrust for people that everyone alive will need at some point. And mistrust leads to lack of communication. For the patient, this could be detrimental. Leave out some vital piece of information, and you could cost yourself your health, or even your life.

Over the past two years I’ve spent a considerable amount of time in physician’s offices, and an even greater amount of time sifting through medical literature, reading about the thyroid, the back, the this, the that, and poring over sites like PubMed, Medline, and Mayoclinic.com. Reading about symptoms. Searching for answers. Learning about various disorders and diseases. Having them ruled out. Starting over. I’ve learned so much about the body that I’ve found myself fantasizing about going to med school (St. Peter don’t you call me ‘cause I can’t go, I owe my soul to student loans). And though I know things now like why a symptoms timeline is important even though you’ve already told your doctor all of your symptoms, and understand why a problem with hormones is anything but as simple as it sounds, much of what I’ve gained through this on-going quest has more to do with what’s going on in my mind than in my body. It’s an understanding of what it means to be a patient, what my role is, with medical professionals, with family and friends, and also with myself. One of the most important things I’ve learned in all this is that communication in the patient-doctor relationship is as much my responsibility as it is theirs. Often there’s so much focus put on what physicians communicate and what everyone’s responsibility is to the patient, that the patient’s role gets very little attention, if any.

I have found myself at times not wanting to tell my doctor or family or friends things. Which brings to mind my mother’s voice, from years ago: The only one you’ll be hurting is yourself. The energy supplements I took were not something I brought up at my first few appointments. I didn’t tell my mother right away about the time I passed out. When I did, I devalued the incident, then let months go before I told her about the aura-like moments that preceded each occurrence.

And I told no one how much it actually scared me. Many of the symptoms come and go, the level of pain sometimes waxes and wanes, but the one constant is this: how much I downplay most of it, to everyone.

*

We were sitting at the table talking about the news, veering into dreaded territory: politics. We left that political ground soon after, when my voice started wavering and tears started to flow with no apparent warning. (No, it wasn’t because of our political climate, although that certainly can incite an urge to sob.) E looked at me, studying my eyes and expression, but remained silent. It was one of those looks men sometimes get when in the company of a woman who’s on the verge of taking the discussion somewhere, but where that may be, he can’t be sure of yet. There could be danger ahead. Or Pleasantville. It is a wise man who has learned to wait for a glimpse of the terrain into which they are headed before commenting on that landscape.

Researchers studying the mind-body connection have found evidence to demonstrate how stress affects the body, some of which you can read about here, and it is now widely accepted that we can use our minds to alter our physical response to stress, with calming and relaxing exercises.

We hear less about how our physical health affects our emotional and mental well-being, and more often than not when we do hear about it, the focus is on how things like regular exercise can help with depression and stress. (A Google search for how the physical affects state of mind brings gazillions of results about how emotions affect health. I’m not even going to give numbers on this one though. Rewording it fifty ways still brings this reversal.) My physical and emotional thresholds had been circling each other like prey, and when the former finally pushed me to the latter, the result was like the creative outburst that ends writer’s block. I spoke without reservation, letting out things I’ve long kept to myself, little truths that, had I divulged them along the way, would have avoided many of the misinterpretations that resulted from my lack of communication.

What I unleashed on E was, as I told him, “all of the things I’m really thinking and feeling while I’m walking around making a conscious effort at convincing everyone, myself probably most of all, that I’m not that exhausted and that it doesn’t hurt as bad as it does. This is what’s on my mind when I say nothing is, or what’s always in the background, even when I’m thinking or talking about something else.” My voice was cracking. Tears were leaking out. E was looking at me, still silent. I read the look on his face. It said he was surprised, that he had no idea. Or maybe it was only my emotion, misreading his reaction.

My health is not a subject I broach with any depth too often. When someone asks “How’ve you been?” or “What’s new?” I resist the urge to crawl into a hole. What do I tell them? “Still wiped out, back still hurts, still don’t know what’s wrong with me, but I’ve picked up a new symptom since last time. And you? How’s the new home?” We’ve all known someone who says the same things every time you see them, generally a complaint about some body part. I don’t want to be that woman. The Whiner. The Bore. The downer at the party, who drives people away. Nor do I want to be the patient who can’t take the pain. The one who always rates high on the pain scale. The one who magnifies this or minimizes that. But most of all, I want to be seen for who I am, not for my health to define me. I don’t want to be that lady whose blog sounds like a symptoms checklist; I want you to read my blog and talk about that fantastic new writer who is going to go somewhere with that talent. Just kidding. Sort of. So I try to avoid the subject, and only let it out when it’s driving me to wit’s end.

Instead I spend days and nights online researching my symptoms and diagnoses, desperate to put a name to it, so they can tell me how to treat it and I can start feeling better. And everything I learn leads to more questions, and the more I dig, the more I realize how easy it is to misunderstand or misperceive so many things in the worlds of health, illness, and medicine. The more I realize how many people I’ve seen who looked fine, normal, but were really standing there in pain all the while I was doubting them. The more I realize how many things I do can be easily interpreted in a way drastically different from reality. A quick example: a couple of times my landlord has come over to fix something, and each time dishes had piled up until it looked like they were protesting. Occupy Counter: the Place Setting Resistance. (Rest assured, were there a dishwasher – someplace where They could Contain and Control the Place Settings! – no such movement would be necessary.) He must think I’m an utter slob. The truth is I hate having dishes laying around. Have they been washed? Then they must be put away. Right now. But the time it takes to wash, dry, and put them away is just enough to provoke my back, and that’s where the real protesting begins. Do I share that little tidbit with my landlord hoping he won’t think I’m a slob, or offer such explanations whenever someone might read me wrong? Depends on how I’m feeling at that moment (and on who or how important the person is).

“A man’s illness is his private territory and, no matter how much he loves you and how close you are, you stay an outsider. You are healthy.”
-Lauren Bacall

When I was in the MFA program, one of my mentors and I were discussing books and writing about illness, when she paused, then said “Illness is a very isolating experience.” I think about this often, realizing more all the time how true that is. But I also realize that though by its very nature illness will always be isolating, to what degree that is, isn’t something over which I have no control.

For one thing, there are health forums galore where, whatever symptoms you’ve got, you can find someone who has had at least a similar experience. Reading them has been an education in itself, but it also made me question whether or not to write about this long road to a diagnosis – to a destination I may never reach. I didn’t want to put my symptoms out there for the world to scrutinize, or prattle on, à la navel-gazer, about my little life. But journaling (yes, I just used a noun as a verb. If you can “friend” people, I can journal.) about it, the writing gains its own momentum, taking me away from myself and my symptoms and into a vast arena of questions to explore.

My decision to blog about it was driven by equal parts frustration, isolation, and also motivation: all this learning has given me new purpose. It’s not to inform the reader about what They don’t want you to know. It’s about what a patient might want you to know, but may not say, for any number of reasons. It’s not about hiding any truths, but bringing them to light. Not about information kept secret or confidential, but about conversations we should be having more often.